My chemo isn’t working, but I’m still smiling

Content warning: This story talks about fear of death and dying. 

When I was younger, I had a protein deficiency and had blood clots in both of my legs. So, when I developed a lump in my leg aged 14, the doctor’s main concern was that I had more blood clots.

They did an X-ray and nothing alarming showed up. The lump got bigger, and my leg was especially painful at night. It got so bad that I wasn’t going to school and spent a lot of time at the hospital. I had another X-ray and an ultrasound where they saw a shadow.

After the MRI and a biopsy, I was told I had osteosarcoma below my knee in my left leg. At first, I didn’t understand what it was, and my immediate thought was: “I’m going to die.”

As well as being shocked and upset, I was angry too because it had taken nearly a year for doctors to diagnose it. I’d initially been sent away with anti-inflammatories and if I hadn’t been persistent and kept going to the doctors then I wouldn’t have known. I felt that because I was a teenager they hadn’t taken me seriously.

I started a very intense regime of chemotherapy at University College London Hospital and had sickness, fatigue, joint pain, stomach ulcers and bowel issues. I’m petite anyway, but I dropped from 55kg to 32kg. I got a lot of infections and spent a long time in hospital. It was horrible and I was grumpy, angry and confused.

After treatment finished, I went straight back to school and cracked on with my A levels. I was happy and content. Everything was perfect for a while.

When I was 18, I started getting strange sensations in my chest. I was still having the regular X-rays that you get post-treatment, but nothing strange was showing up on them. The sensations got more intense and I developed a cough that wouldn’t go.

I asked my mum to take me to A&E where they did another X-ray. When mum told them that I was sleeping abnormal amounts and sleeping through my alarm, they decided to also order me a CT scan. The scan showed a mass in my chest which was osteosarcoma in my lungs.

I was shocked. You know that relapse is a possibility, but I hoped that I could go back to normal. My whole world was shattered. I had to leave school as I couldn’t commit to it while starting treatment again at UCLH. It was so stressful.

I had chemo for five months and had the upper lobe receptor in my lung removed. Fortunately, I finished treatment and everything was looking up. I moved off to uni and things went back to fairly normal.

I found another nodule in July 2021. I was feeling exhausted, and I stopped going to work. I couldn’t take two steps without feeling faint. I was really scared to tell my mum that something was wrong. She went away for five days and when she came home, she took one look at me, and she could see I wasn’t well.

She took me to hospital, and they did a CT scan which ruled out osteosarcoma. I had a bone marrow biopsy two days later and it showed that I had leukaemia. My first words were: “Are you joking?” I was so tired of it all.

I was transferred to the Teenage Cancer Trust unit at The Royal Marsden NHS Foundation Trust in February 2022. I started on intrathecal and oral chemo. Unfortunately, my leukaemia has got worse, and the chemo isn’t improving it.

There may come a time when the doctors decide my body has had enough and they don’t want me to carry on with my treatment, but they let me have a say in it and I’m in control. Everything we are doing is on my terms, so if I didn’t feel ready to stop chemo that would be okay.

I’ve only told a couple of close friends that the treatment isn’t reducing the cancer and they were really sad. They are a bit scared to ask questions, but they are being as supportive as they can.

There are some days when I struggle to get up and do anything and other days are filled with going to the hospital, but I try to live as normally as possible.

I’m living with it at the moment and I’m still smiling. I could sit here and scream and cry and cut everyone off, but that wouldn’t help. I’m going to keep pushing forward. It could be so easy to get stuck in sadness and panic. I enjoy spending time with my family, and it makes my day to play games together and have a laugh.